Thanksgiving surgery

For those of you that havent received the full run down, or if you have and didnt understand, here is the essentials behind Saylor's recent adventure.

As many of you know Saylor has two stomas in her stomach. One is to access her bladder and the other is to access her bowel. When we had Saylor's "new" bladder put in part of her bowel was used and after that procedure she was never the same. While many SB kids do not have bowel or bladder control due to paralysis the bladder surgery compounded this existing problem by creating a contraction problem with her bowel muscles. Basically they no longer would contract and move her waist through her very well. She also did not have much control over them when things did decide to move through. Because Saylor is so high functioning and exists pretty mainstream in the world and with her peers we found it essential to fix this problem. Thus the bowel stoma. We have had it for several years now and it has served its purpose well.

For about the last year we have had a lot of pain and exterior problems with the actual stoma site, not its function. They seemed to escalate just as we had the baby and shortly thereafter it was obvious that something needed to be emergently done. It was almost as if her body was rejecting the "door" to the stoma. Vascular scar tissue was all of the sudden building up, immense bleeding and pain was a nightly routine. Her surgeon removed the "door" late oct just before Halloween. But we all knew she wouldn't last long without a replacement before her system backed her up and cause more serious problems. Luckily he did have a plan that would hopefully fix the problem, create a new stoma, and get us back on a healthy track for her.

We all had scheduling factors to consider and with a new babe I was very nervous about how we were going to do all this. With wrestling started and Nate's demanding schedule with work also options were limited and I knew I couldnt pull this one off on my own with Nox. So it came down to Thanksgiving. Yep we chose that time ... and Saylor gracious surgeons worked around us!

Bowel surgery is a challenging and risky type. It usually includes a clear liquid diet for days prior and a "clean out" perhaps the worst of it all actually. Saylor actually handled the clear liquid diet at home pretty well considering and complained very little. We made fun things like jello jigglers and ate candy jolly ranchers with sprite.

Admission day came though and our little world was turned upside down! I ventured on this one day on my own with Saylor and babe. Full of nerves I arrived to find that we were getting a "luxe" room for how hospital rooms go and the nurses to be very supportive of my predicament. Saylor was very nervous and full of extreme anxiety. Something that would prove to be a companion for days to come. In fact I think one of the hardest things about this surgery was the mental part for Saylor and watching her struggle through it.

The picture above is saylor eating a slushy with the dreaded NG tube down her to clean her out. It was a long day full of sad words and discouraging times but with the loving arms of our Savior, lots of tears, and prayers by us and others we made it through to surgery the next morning.



Surgery day was likely the most relaxed day of the entire week stay. Saylor was not in pain and was very comfortable. Mostly out of it the whole day. She did not require much from us and It was such a relief to have a little bit of a respite break. Surgery was long but went well.

The days to follow brought a lot of pain and more anxiety. Every spectrum of pain was present for Saylor and several for Nate & I too.

Hard times and Holy places really says it all and maybe even an understatement. These are the times though that I realize are my most cherished in so many ways. A time of growth and perspective. A time of sweetness and pain that thins the veil here on earth.

It reminded me how connected my children are and were as she wanted them and they wanted her. The kids were mostly banned from the hospital, minus little babe for obvious reasons. Some tender moments of comfort and cheer.



I went home every night and came back every morning and Nate played the live in the hospital primary care giver for the first time in 8.5 years. Kind of a strange roll reversal but it was actually really nice for both of us to get a taste of the other side. He nurtures her differently then I do ... he does it by putting on purple capes and doing crafts with her and then becoming kind of a hardened coach when it was time to get up and get moving!



Many of you have asked me "did it work" I dont yet have that answer for you. We are not using the new stoma as that whole area needs a lot of time to heal. But soon we will start using it with a small volume and a few months I should know. What I do know is that our lives and mostly Saylors have had less pain since the removal of the old door then we have had in a years time. So it was worth it for that alone. I hope that the new system brings her function and physical peace.

Like all our adventures with Saylor, I expect this was a necessary trial for us all and that good will come of it.



I am so grateful for the immense amount of support we received. For prayers and well wishes. For fasting and temple roll placement. For food and visits. For caring for our other children. For errands, leaf raking, and emails from those we never expected. It is sometimes hard to be the recipient of service, but it too has its blessings and lessons. We pray that you all will be blessed for your kind acts of charity and know that we love and appreciate you.

The G Tree

This year at our house during the month of NOV we had a GTree in the house! A gratitude tree that started off bare and eventually finished its days off like this. First time tradition that will never be lost, it was a fun and a beautiful experience. The girls helped me make the leafs and we left a vase with the leafs and sharpies near the tree all month, everyone was free to do as much or as little as they wanted and to write what they wanted. The only rule .... no reading the leafs!

Thanksgiving day would be a lovely day to read the leafs but for our fam this year we read on the Sunday after T-day. We spent T.day at PCMC and i just decided it would best to wait until we were all home gathered around our own table eating together. And i am grateful i did, it really extended the season a bit for us.

All the leafs were meaningful and touching and i couldn't believe the mature perspectives of my kids. They continue to amaze me. And some of the leafs left us rolling with laughter. Good times!

new appreciation for newborn photogs

I have a good deal of photography friends and that many more acquaintances! I even know my fair share about the industry and had been told before that newborn photography was difficult! In no way did I not believe this notion I just really had no idea how difficult!

I used the same amazing photog {sweet memory gardens} for this shoot as my maternity shoot. I have so much fun with angie and can really relate to her on a personal level and I adore her newborn and baby work, it really is her niche. But i pushed her and therefor my own experience out of the box. At angie's studio the conditions are prime for newborn shoots, its warm and all the props are there and angie has this experience down to a science. I really wanted shots here at my home though and thought that it would still be ideal and all because it was home right? Not so much! Here are the shots I just couldn't live without ...




I really wanted to snug the little bug into one of our bookcase cubbies. I love to read and I just have been thinking about this shot for months now. We waited a bit until he was a few weeks old because of the whole oxygen/monitor thing and even here he is still on the stuff we just had to sneak him on and off to get shots without it. He barely fit in the cubbie, they just grow so darn fast! Just in the nick of time.



angie was so darn sweet that she made a itty bitty wrestling singlet for us knowing that nate was really into wrestling and we got these shots just for him. She simply is the very best!




I personally love these two and this one as well ...


It had been a very difficult and challenging day for me personally and i was frankly nothing shy of a big mess so our original plan to have a whole family session was shot done by my down trodden looks and nates lack of good scheduling. It worked out to get a shot of all the kiddos though, an especially charming one!



angie was with us for 5 or 6 hours and was so patient as we juggled a fussy ornery baby, nursing, 3 other kids, changing bums, oxygen, and monitors. I wanted to cry eventually! I had no idea that getting just a few shots would be so traumatic and difficult and take so much time!!! I marveled however at angies patience and her ability to calm a baby that wasnt even hers, she has a serious magic touch and really knows what to do positionally and how to make it all doable and comfortable. Newborn photogs really work for the money! holy moly!




because we are friends angie also let me know that this was especially difficult and though most newborn shoots are a challenge that she found nox to be a bit more fussy then the fussiest of kids she has shot. kind of made me feel bad, and good at the same time! it wasnt just me after all thinking he was so challenging. i love that she can be honest with me too!



We also got this shot below our Anthony Robles quote on our wall. It was important to me for emotional reasons. I have blogged about this quote before but really it meant a great deal to me during the pregnancy. deciding to endeavor on this journey to bring nox here was a difficult decision and then a blessed surprise. But it was really hard and anthony's words reminded me a great deal of the pleas to my Father in heaven that i uttered so frequently. "make it hard, just make it possible ...."

and last but not least a little gem to send you off for the holidays! a photoshoped work of genius.


Nox is healthy and doing quiet well considering the rough start we got. I really feel like he is settling into our little fam delightfully. He is now just over 2 months and is weighing in over 10lbs and 21 inch long. He is eating well and breathing well too! what a relief. We still have to be so cautious with him in the coming months but we are so grateful for all the love, support, prayers, amazing pediatrician and the blessings that have come.

and to you my friend angie ... you are so truly sweet and charitable. I simply adore you and can think of no other friend in your industry i would have rather have gone through that day with!

Photography credit: sweet memory garden

House arrest

This post is long overdo, i fully intended to write about these things before now, our lives are so full of things to write about and share, i cannot keep up! so here it goes ... though its a little dated!





As you might assume from the previous post coming home with accessories initially did not feel overwhelming, and let me just say up front even though it became overwhelming i of course would still have rather of come home, i would take any sweet child of mine at home over the hospital any day regardless of the situation.

It took some serious adjustment to deal with all the tanks, tubing, and monitors. Not anything like having a healthy newborn at home. We have experienced a good deal of fun accessories of this type at home but believe it or not, not this particular kind! I soon realized that the baby was not at all mobile. I couldn't carry him from room to room to get anything done or check on other children. In fact moving him was quiet the endeavor. The face stickers were torment and the tubing up his nose was too. constant pulling and replacing of numerous facets of equipment accompanied by even more constant beeping. I think we might also be completely incompatible with monitor sensors, we seemed to burn through those at a rate that was alarming to our home health care company!

it didnt take long for me to come down off my high of being home and crash into the new arrest that i had found myself in. In the mornings it was so difficult to get baby and car seat and all his equipment out the door along with 3 other kids, all their homework and school needs, a wheelchair and crutches and myself ... just for 5 min to take them to school. fun times. repeat again at the end of the day! if i ever was any kind of a recluse it did not compare to what i became over the month of O2 at home!

We spent a lot of apts at dr laurets office as he patiently worked through some serious reflux issues, weight gain and growth issues, and the obvious respiratory issues. days still felt long like they do in the hospital, i wondered {even though i knew better} if we would get to a "normal" place in time. I even felt guilty about my anxiousness and impatience, i know many families go through much more then we do and deal with these very same things much longer then we do! heck in some respects i had been through much more then this, i dare say i was struggling for my usual strength and patience.



our time did come to an end and though he seemed to be starting at a snail pace he sped up and we got on our way. He came off O2 and monitors the second week of October, freeing us all! It felt {feels} so good! we still have respiratory concerns, especially as we head into RSV and cold weather season and he still is very much in a cautionary state but all seems to be headed in the right direction.

Whats to come ... well the most darling ever newborn pics from the craziest newborn shoot ever & 2 month old stats!

On a side note: our sweet saylor has also been dealing with some serious health challenges as of late. Our period of rest and stabilization with her has ended. She gets admitted to PCMC tomorrow and will have surgery on tue the 22nd. should be a fun thanksgiving in the hospital. a first for our little family. I can think of no better way to spend at least one gratitude day in my life, i have so much to be thankful for! i will update fb with her condition and eventually the blog.

much love.

nox & his birth story {part 2} - the NICU

As much as it is to be expected at this point that our baby would end up in this challenged area of the hospital, its still an emotional struggle and a disappointment. We had a great deal of NICU experience under our belt prior to this, a little bit with the two older kids, and months worth with saylor, so I expected to be able to get through a little breathing challenge like a breeze. Not so.

We carefully selected our delivery hospital and OB. So much so that it greatly inconvenienced us as all of those services were in slc and we were in provo. We knew that there were very few docs willing and actually capable of taking on the risks that we had to offer with a pregnancy and we wanted someone familiar and comfortable. With dr ball {our fetal surgery UCSF OB} at st marks, the decision was a no brainer! But the NICU brought that choice all into a different perspective and really made me acquire some serious second thoughts.

Pretty quickly we felt unwelcome in the NICU and unaware of what was going on with Nox. The nurses were not comforting or kind, they were pushy and obtrusive and made us feel not welcome there. There was no level of communication with the neos and or nurses and anxiety began to mount for us quickly. I actually had to seek out the neo and demand info and a care plan. Though over the week we were delighted to have a good warm nurse here and there things didnt get much better. I felt imprisoned and depressed. There came a sense about the situation that he wasnt ours and that we could not and should not be involved in the decisions behind his care. Granted i was sensitive and emotional but people i wasnt flying blind here, been there, done that, i knew what my previous experiences had been. This was such a far cry from UCSF, a place that eventually grew to be part of our souls and our home! We were dumbfounded and unsure of what to do and how to handle it.



The situation improved just a tad when my OB stepped in after I told her that things were not going well and that i was upset about several things. She called the social worker without telling me and soon we got a visit and the staff began to endeavor to meet our needs. But it felt reluctant, and then we felt like were being ridiculous and or abnormal or whiny and difficult, one of "those" parents. A really unfair feeling from my perspective.

The peek came near the end of our stay when nate had gone home to care for the other kids and go to a football game and i was left to juggle the insanity i was experiencing. One night at 2:30 am i went to feed nox and found him missing, in a procedure to change his IV yet again. His veins werent holding them well. I could hear him screaming in the other room and over an hour later i lost it! They poked at him for an hour straight, he never stopped screaming. Several people tried and no one could get in a vein. I was livid that they did not stop and give him a break and re-evaluate their plan with a neo. I got the charge nurse and told her enough we are taking a break, the IV is not life or death its only for antibiotics it can wait. She was so angry that I had overstepped bounds this ridiculous place had so rudely drawn, she treated me as though i had intruded on another baby's care. She immediately was defensive. She began to argue with me believe it or not. 30 min later she was still fighting with me and i couldnt take anymore. The stress ruptured and i headed up to my room to take a moment to remove myself and call nate to determine how to handle this.

nate usually is the lower key individual in these circumstances. Urging me to be patient and not judgmental to look at things in other perspectives. When it comes to medical stuff its usually me armed with the knowledge and communication. not this time. When i got off the phone i thought things were no different, that i would have to figure out how to fix this despite that i felt emotionally out of my element and uncomfortable as all get out. to my surprise nate was determined to resolve this as he sat home filled with anger about the situation. he called the hospital and demanded to talk with the charge nurse who fought with me and hospital administration. it did not take very long for people to start coming to my room with apologies. The next day i felt a peace in a plan and clear constructive communication. I still felt unwelcome and even more like the parent everyone hates while i visited the NICU but i felt comfort in nates support and a turn around of care.

It became evident that they wanted to get rid of us as much as we wanted to leave. and that one helpful staff member, the social worker began to step in. So they arranged for some home health care and a way for us to go home even though Nox was not entirely ready.

Only 24 hours later I took my son home on oxygen and monitors. I felt like i truly was being released from prison. I cant even begin to explain the strange and unfamiliar emotions i felt. the release and happiness. the feeling that he finally was mine! A week that felt like a year! I have been there before, we have done 20 surgeries alone on saylor in addition to the NICU stays. I know how taxing a hospital room can be. But this, this was so far from pleasant the feelings were extreme. {little did i know that i was moving from maximum security to at home arrest.} either way it was a much better situation and i was delighted to have my little man back full time and be able to delight in the little things, like a shower in my shower and my kids surrounding me and a familiar place to rest my head.

more on at home arrest to come ...

nox & his birth story {part 1}

Having a planned c-section was a very surreal and strange experience of emotions for me. I never really got to the place were I was 100% ready to relinquish the experience and the miracle. It felt strange to me that it was over and I had done what I set out to do. I had never before felt that way, the 3 others ended with an embrace and immense relief to be emptied and were a bit unplanned when it all ended. This experience allowed for a good deal of planning and contemplation, something foreign and somewhat unexpected. We in fact MADE it to our destination of 36 weeks, there I was at that destination with a strong and big baby suddenly filled with a bit of sadness that it was over and immense happiness and anticipation as I reflected on my little man and his new presence in my life, and the possibility of a more normal experience.

Driving to a planned delivery, knowing that what was inside of me was about to come out with calmness and not much intensity was a new emotion for me. After we arrived at the hospital and the process began I was overcome with tears and anxiety as I got a little nervous for surgery and felt that the time was fleeting too fast and was not adequate for me to experience it all. The minutes raced by and soon I was in the OR delivering a little man. He came out screaming and BIG for his gestation. and with a full head of dark hair! something very unusual for us!

Nox Heleman O'Brien - 8:15 am September 14th 2011 6lbs 8 oz.



the sadness then fleeted and happiness filled my soul and excitement that he was big and healthy and hope, i filled with hope that this one would not go to the NICU and would room with us and go home with us! In just moments my expectations hit really high and out of control and just as fast as they soared they came crashing down as he began to struggle to breath and was removed from our possession.



Only a mere few moments graced us before he was removed and taken to the NICU where he would stay for the next week overcoming struggles I did not believe would befall him.

The next hours filled me with agony and familiarities while i struggled with the pain that comes after delivery alone while Nate attended to Nox and the intense happenings of the NICU. We almost dont really know how to do it any other way. So i embraced what i know all too well and began fervent prayers for the strength of my son and the team of doctors caring for him.

More to come ...

Beauty & Drool

When I was pregnant back yonder in the younger days one of my closest friends told me about this book, "The Girlfriend's Guide to Pregnancy: or everything your doctor wont tell you" and though I meant to read it this time around {I did read it last time}, I never got to it. But I haven't forgotten the gift that it was to me, it truly has stuck with me through all these years! I remember distinctly thinking "I wish I had had this book with my first baby or that someone would have told me it was all going to be like this!" This book really gets down to the nitty gritty of what it really IS to be pregnant! Because the day in and day out IS not what your doctor tells you. Its all the little things that change every facet of your body, mind, strength, and spirit. Some are less then graceful and beautiful, but they all make up the cumulative beauty that IS pregnancy, the creation of life!

To express the beauty of pregnancy coupled with some of those less talked about things, I thought I would create a unique and raw post for you. I never took maternity pics with any of my 3 previous pregnancies. I literally {no joke take a look at some of my raw fb pics ... } am one of the very least photogenic people in the universe. On top of that, I dont handle viewing myself all that well so this seemed like a no brainer ... maternity pics are OUT! But as this pregnancy progressed and knowing that I have matured a great deal, I couldn't help but want to consider it. Because this IS beautiful, even if its not photogenic. In fact I find it to be so incredibly beautiful, especially considering the physical challenge that it brings me specifically that I wavered my decision a little and decided that maternity pics are ON! After seeking out just a few of my most favorite photogs for advice and inquiry I then flopped again to the other side of the fence and decided not to do it, until that is, my loving photog friend Angie convinced me to do it with a sacred oath of private security upon the shoot and the images. We had a great time at our little shoot and Angie made me feel so comfortable and beautiful. It wasn't long before I was so grateful that I did this! So mixed with the beauty {edited} that the talented Angie of Sweet Memory Gardens captured of me and baby, you will find grueling text about some of the specific nitty gritties of this pregnancy, things a doc would never tell you, but things a girlfriend should!


DrOOL: I picked this image for this topic because of how the two conflict and contradict each other. A little sexy right? Well drooling is NOT sexy! I cannot recall the need for excessive saliva in baby baking. Since when was that an ingredient? It never was for my other 3 and they turned out just fine! This time around I cant seem to stop the flow! Waking up in pools of drool next to the man you love wont likely create feelings of beauty or intimacy for either one of you! Not to mention waking up from a nap with a soaked sleeve or shoulder ... never in my life have I had to change clothes mid-day for this type of problem! Not to mention the sudden need to swallow more frequently while in conversation to reduce the incidence of spitting! Couldn't get more real then that right? Apparently I am not the only one because limitless baby/pregnancy websites list and discuss this issue. Good to know I am not a lone, still not liking this added ingredient. What I have learned: It actually has a medical terminology, go figure! Welcome to the unpleasant side effect known as ptyalism or sialorrhea. Also apparently more common in women with more sever cases of morning sickness. {or in other words throw-up all day long sickness, or in my case even all night long!}


CRaVINGS: I am writing about this only because I think its one of THE most common questions that befall an expecting mother, and I have been asked my fair share. I have a sweet tooth on a regular basis anyhow but pregnancy does not usually magnify that for me. In fact some of you might already know that with Stock I ate a lot of mayonnaise! PLAIN! This time around vanilla has been the flavor of choice. But not just any vanilla, quality counts! Costco has delivered every time with their Kirkland brand vanilla ice-cream. I also have been known to eat a Haagan Daz bar {or two} a day! And for a few weeks somewhere in there I really enjoyed SCORE bars. As of late though the amount of food of any kind consumed by me and the baby has decreased and the level of ICE has increased. I am not an ICE person, I typically like low ice in all my drinks, the cold typically bothers my veneers. And I have never been known to chew ice for pleasure, but here I am chewing endless bags of ice away.


How many times do you PEE in the night?: My dark hours are about as comfortable as laying on a bed of rocks! Actually I was really delighted with the outcome of my willingness to lay on this creek side stone beach. And in reality my night routine is much more unbearable then getting this picture was or ever could be. I am not sure if its my age this time around, or damage done to my inner urinary organs during fetal surgery and emergency delivery, or if its just the position of this particular baby, or a combo of all sorts of elements but I feel about 90 years old with a 100% incompetent bladder. I swear to you that not a night has passed in the last 6 months that I have gone to the bathroom less then 10 times between 10pm and 7am. Who does that?! And can live with it long term?! Honestly I truly have considered a catheter its that bad!


Non Stress Test ARE actually STRESSful: Like many high risk expectant moms as I have gotten down to the wire it has been a weekly requirement to undergo NST's & AFI's. The more I do, the more I feel that they cause more stress then actually monitor stress. Having in depth ultrasounds on the same day adjacent to the AFI has made me realize that the fluid measurement is likely not accurate, so why do it? And 20 min of rushed monitoring does not equate to a definitive answer of contracting or not. Not to mention for me the drive to and from st marks in constant construction helps out my stress level a ton!


HuMAN oVEN: It is in fact true that a pregnant woman runs a few degrees hotter then the rest of us non baking ovens walking around. And anyone intentionally planning a summer pregnancy is truly INSANE! Because this has been downright nearly unbearable! I am just one big ball of hot sweaty mess!

HYPERventilation?!: I pretty continuously have a tingling feeling in my face. Which i have been told is some kind of hyperventilation. I am so bothered by the idea of mis-diagnosis and not being listened too. On the flip side I have learned over the years {especially with saylor} that I am also very bothered by subjection to mass quantities of tests to determine a culprit of a specific kind. I feel this in the calmest of times and for a long duration. I have tried taking deep breaths, short breaths, any kind of breaths you can think of. And yet the tingling persists. I have to admit its far better then the "vaginal spasms" some idiot doc diagnosed me with while pregnant with saylor.



HoW DO U answer THAT ??: So I get asked a lot, "how are you doing?" or "how are you feeling?" And genuinely it is in no way the question that bothers me, in fact I really appreciate the genuine sincerity of those that truly care about how I am. Its the answer that bothers me. How does one answer that question when they feel like I do? With grace and honesty both at the same time? My life is bi-polar actually. In any given moment I can feel elated by the miracle of life moving inside of me and then tortured by the pain it creates. That is how I feel, for those of you that are wondering.

I'll leave you with just those few gritties and save the most disturbing ones for those "girlfriend" conversations. In the end this has been a pregnancy well accomplished. I have made it further then anyone involved anticipated, and without being in bed! {Though not without restrictions, meds, and pain!} I worked nearly till the end ... ok in some regards I am even still working :) and have managed 3 other kids with craaaazy schedules and an even busier husband! Baking this baby boy has been a joy for the most part, a blessing beyond measure, and an assurance of who I am and want to be. I have enjoyed this pregnancy more thoroughly then ever before and in many ways look with ill anticipation to it's end. The movement inside me, a constant miracle and feeling unlike anything else will be so missed and yet his arrival will be such a relief!

All images courtesy of: Sweet Memory Garden